I’m up to Chapter 10 now and it’s all about MCAD and the nose. How many of us have sinus and nasal issues?
Probably just about everyone.
But apparently our sinus and nasal problems aren’t the driving force behind seeking help for our mast cell disorder.
Many of us aren’t nearly as concerned with the nasal annoyances as we are things like intestinal reactions to food, or swelling, or hives, or a myriad of other things that are far more annoying and life-altering for us.
In fact, according to Dr. Afrin:
..somewhat ironically, I really haven’t had a patient (yet!) whose dominant issue with MCAS has been in the sinuses or nose. I say “ironically” because sinonasal issues actually are very frequent in MCAS, which shouldn’t be at all surprising given that some of the highest concentrations of mast cells normally found in the body are in the nose and sinuses, which of course are environmental interfaces. So sinonasal symptoms are frequent in MCAS, but not nearly as life-altering as some of the other symptoms.
Most of us probably would rate our nasal issues low on the scale of annoyances, I know I certainly would. That doesn’t mean I don’t have them! I definitely get all the symptoms including congestion, post nasal drip, external nasal drip, irritation and even sores in my nose. I also get what he terms “sinonasal edema” which means swelling of the tissue. Often to the point it closes off.
In fact, as far back as I can remember I have had these problems and so has my son who has also been diagnosed with MCAS. I also get sneezing fits when I’m degranulating (it usually starts with 2 sneezes combined with the hiccups for some reason for me).
He goes on to talk about how chronic obstruction can lead to sinus infection, but usually the sinus inflammation is sterile, or not caused by bacteria or a virus. That doesn’t stop people from seeing the doctor, thinking they have a true sinus infection. He explains:
Unsurprisingly, though, in many patients the symptoms of sinonasal inflammation are interpreted — despite absence of fever — as signs of infection and are treated not only with decongestants and H1 antihistamines but also antibiotics. Many patients wind up receiving extended and/or multiple courses of antibiotics…”
I’m sure you know where he’s going with this. He describes how when the degranulation flare takes its course and winds down on its own, patients and doctors may assume it has cleared due to the antibiotic but that can be a slippery, even dangerous slope. Overuse of, or indiscriminate use of, antibiotics has contributed to multiple antibiotic-resistant bacteria now plaguing mankind.
Another sinonasal issue sometimes seen in MCAD is called idiopathic epistaxis, better known as nosebleeds. Sometimes it can be bad enough to spur cauterization, something my own son with MCAS has debated having done over the years for his frequent nosebleeds which he has had since childhood. Thankfully, since being put on the proper treatment for his mast cell dysfunction he has only had one or two nosebleeds in the last several months, compared to one or two a week.
What’s generally not recognized, though, is the potential for MCAS to be at the root of this problem through (abnormal) release of the natural anticoagulant heparin by the relatively large number of mast cells embedded in the linings of the nasal passages, where there also happens to be a particularly rich network of blood vessels so that cold inhaled air can be warmed somewhat before passing into the lungs. It shouldn’t be surprising that if one mixes a rich network of blood vessels with blood vessel fragility induced by inflammation, and then one pours heparin into the mix, there might be some bleeding as a result.
He says that many doctors are unaware that our bodies produce heparin naturally. The two known cells responsible for our native heparin production are the mast cell and the basophil. He explains:
In fact, heparin was the very first mediator product of the mast cell to be discovered (back in 1939), but the amount of heparin that get released by (usually localized) mast cell activation phenomena almost never is enough to cause any abnormality in the partial thromboplastin time (PTT) test that’s used to monitor whether enough of the pharmaceutical heparin is being administered to achieve the desired systemic anticoagulation effect.
So again, like with almost every test administered to someone with MCAS, it’s very likely this one would come back as “normal” despite heparin being released inappropriately and in amounts sufficient to cause heavy nose bleeds.
Given the fact that my own son with MCAS has found almost total relief from frequent nosebleeds since being properly diagnosed and treated, we can safely assume this is definitely all MCAS related. Neither of us struggle with nasal congestion anymore, either, unless we are triggered.
Join me next time when I go into the next chapter of this amazing book, called “Chapter 11: Mouthing Off About Mast Cell Disease: Oral/Pharyngeal Findings in MCAS”. It’s a longer one with a lot of real patient stories and more fascinating information about mast cell disease and its impact on every system in our body, including our mouths.
Until then, check out the other posts in this series by clicking here: The MCAD Book Club: The “Never Bet Against Occam” Series. Also, won’t you please take a moment to share this post (and others) on social media? The purpose of this website is to bring awareness to mast cell disease and I can’t do it alone. I rely on dear readers like you to help spread the word. Thanks so much and stay safe! Remember, we’re in this craziness together.
xo Michelle Dellene